Blog #3: FHCS versus Endometriosis

Endometriosis of the diaphragm and/or liver can be mistaken for what?  An STD?

Late last year an article about Pelvic Inflammatory Disease (PID) and associations with endometriosis was discussed online in the FB Group: Nancy’s Nook Endometriosis Discussion and Education Group.  The article led me to recall a discussion with my primary care provider a few years ago. That discussion came during an office visit while reviewing intra-operative photographs of extensive thick white adhesions and scarring of the right upper abdomen, liver and diaphragm.

I know I’m not the first woman approached by a medical provider about PID.  The topic caught me off guard.  I knew about Fitz-Hugh Curtis Syndrome (FHCS) and its relationship to Pelvic Inflammatory Disease (PID) from my graduate studies.  I never imagined being questioned about my own intimate behaviors and choices.

Given the professionalism of my provider, and his rapid dismissal of the possibility, I was blessed not to face a barrage of questions with inquisitive tone and facial expressions other women have, and will experience.  However, I did have brief, internal feelings of embarrassment, uncleanliness and shame even though my personal behaviors and actions have never been conducive to acquire a Sexually Transmitted Disease (STD).  I also knew my provider was not passing judgment or perceived me in any way to suggest I was a risk taker with multiple partners.  However, about a week after this recalled memory, I experienced a second incident that centered around lack of awareness and misconceptions of endometriosis.

Social media platforms are great methods to amplify information and newsworthy material.  Regrettably they create equal opportunity to distribute erroneous information. A lot of users post or respond based upon their perceptions, which are created through their experiences and information they have received (accurate or inaccurate).  Through social media, I reached out to a politician in regard to women’s health funding and deficiencies specific to endometriosis.  A response from a member of the public stated the disease could be cured with moral behavior and better dietary choices.  It was also implied, those with endometriosis are 100% responsible for developing the disease.  I have no words for what I felt at the moment.  But…I can do something.

The recalled memory of my experience with a medical provider and written exchange with a member of the public prompts me to raise awareness about diaphragmatic endometriosis.  Specifically, endometriosis of the diaphragm should be a differential diagnosis among females who present with right upper quadrant abdominal pain (with or without referred pain to the right shoulder) and/or adhesions viewed with imaging or surgery at the diaphragm and liver.

Advocates continue to speak out to correct the myriad persistent myths and misconceptions that stigmatize and cause, not only physical harm through delay and appropriate care, but also mental and psychological harm.  An average 7-to-10 year delay (for some, decades) to diagnosis is unacceptable.  To add further insult to those with endometriosis, the absurd premise still perpetuated today; persons with endometriosis are 100% to blame for their disease.  Uninformed members of society still perceive those with endometriosis had it coming and reap what they sow through lifestyle choices and experiences.  Among the more common myths: amoral sexual behaviors, sexual abuse, poor diet, exercise and stress management.  The majority of healthcare organizations, associations and societies continue to disperse outdated, inaccurate information, myths and misinformation that reinforce misconceptions.  These are all issues which harm the well being of women with endometriosis.

It’s important to clarify that PID and development of FHCS has occurred in ways other than unprotected intercourse.  A few other ways documented include: insertion of an IUD, post-renal transplant with mycoplasma hominis infection, tubal ligation and appendectomy.(1,2,3)  Although FHCS is more common among young female menstruators, it has occurred in women post-menopause,(2) and among men.(4,5,6)    FHCS-like adhesions can also occur with Systemic Lupus Erythrematosis, Familial Mediterranean Fever (FMF),(1,2,7) Peritonitis, Acute Cholecystitis and Carcinomatosis(5) can present with FHCS-like adhesions.  Not all cases with FHCS have been able to determine its original cause. (5,6)

What exactly is FHCS and why should healthcare providers and the endometriosis community know more about it? (To continue reading:  FHCS vs Endometriosis: Endometriosis of the diaphragm and/or liver can be mistaken for what?  An STD? )

Trish  (June 11, 2019)             Tweet Trish’s Blog